Things You Don’t Know About A Special Needs Parent: A Revelation

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Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don’t know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).

Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don’t share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don’t claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I’ve missed any, please leave a comment below.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors’ visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us.
2. I am jealous. It’s a hard one for me to come out and say, but it’s true. When I see a 1-year-old baby do what my son can’t at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend’s kids. Sometimes, I just mourn inside for Jacob, “It’s not fair.” Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob’s rare condition. It sounds petty, and it doesn’t diminish all my joy and pride in my son’s accomplishments. But often it’s very hard for me to be around typical kids with him. Which leads me to the next point…

3. I feel alone. It’s lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it’s so not what my world looks like (check out Shut Up About Your Perfect Kid). It’s been a sanity saver to connect with other special needs moms, with whom it’s not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob’s unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I am scared. I worry that I’m not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob’s future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being “different” in what’s often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob’s disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob’s future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.

5. I wish you would stop saying, “retarded,” “short bus,” “as long as it’s healthy... ” I know people usually don’t mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It’s disrespectful and hurtful to those who love and raise the kids you’re mocking (not to mention the kids themselves). As for the last comment, “as long as it’s healthy,” I hear a lot of pregnant women say this. Don’t get me wrong, I understand and share their wishes for healthy babies in every birth, but it’s become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. “And what if it’s not healthy?” I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

6. I am human. I have been challenged and pushed beyond my limits in raising my son. I’ve grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I’m just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it’s nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it’s because it can be hard to talk about my son. Which leads me to the final point…

7. I want to talk about my son/It’s hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I’m having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don’t often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn’t mean that I don’t want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like “How did Jacob like the zoo?” or “How’s Jacob’s sign language coming along?” rather than a more generalized “How’s Jacob?” which can make me feel so overwhelmed that I usually just respond, “Good.” Starting with the small things gives me a chance to start sharing. And if I’m not sharing, don’t think that there isn’t a lot going on underneath, or that I don’t want to.

Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I’d come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary “performance” difficult or even impossible.

It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is — no matter how they stack up against what “should be.” Raising a special needs child shatters all the “should bes” that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don’t know about a special needs parent… I may have it tough, but in many ways I feel really blessed.

Credit: Huffington post

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The Butterfly Child: The Pain is Nothing compared with the Will To Survive

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Fourteen-year-old Jonathan Pitre from Russell, Ontario is an avid hockey fan. He loves his hometown Ottawa Senators and always dreamed about playing the game. But he never had the chance.

Jonathan, a.k.a the “Butterfly Child,” suffers from Epidermolysis Bullosa (EB), a rare genetic skin condition commonly referred to as “the worst condition you’ve never heard of”. Jonathan was born with EB, and has spent his entire life in intense pain. To help manage his condition and prevent infection, Jonathan and his mom Tina must go through the most excruciating process of Jonathan’s day — his bath. Watch the video below to see what I mean.

Despite his daily challenges, Jonathan’s strength, character and courage — qualities we worship in our athletes — is unlike anything we normally see in the sports world. Jonathan is an ambassador for DEBRA Canada, a non-profit organization and charity dedicated to providing support for families affected by Epidermolysis Bullosa, and heightening Canadians’ awareness of the condition. Sometimes, it’s the kids who face the most adversity that are the most remarkable of all.

It’s heartbreaking to see someone like Jonathan in so much pain, but his attitude, courage and personality? Truly inspiring. If you agree, please SHARE this video with your friends on Facebook!

Let’s view Jonathan – The butterfly Child

Children of warmer and less controlling parents ‘grow up to be happier’

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A new lifelong study from University College London (UCL) in the UK, published in The Journal of Positive Psychology, has found a number of important predictors of mental wellbeing in adulthood based on their childhood environment.

The researchers assessed 5,362 British people aged 13-64 – forming a representative population for survey purposes – who were part of the Medical Research Council (MRC) National Survey of Health and Development (NSHD). This unique national survey has been tracking people since their birth in March 1946.

Of the study participants, 2,800 are under active follow-up, while complete wellbeing data was gathered for 3,699 participants at the ages of 13-15, reducing to around 2,000 participants by the ages of 60-64.

Using a 25-item questionnaire, the research team aimed to measure three different concepts of care.

To assess parental bonding, study participants were asked to agree with statements such as “appeared to understand my problems and worries.” Phrases such as “tried to control everything I did” were designed to assess psychological control, while disagreeing with statements such as “let me go out as often as I wanted” aimed to measure behavioral control.

Adults completed the questionnaires retrospectively to describe how they remembered their parents’ attitudes and behaviors before they were 16 years old.

The study controlled for confounding factors such as parental separation, childhood social class, maternal mental health and participants’ personality traits.

Psychological control ‘limits a child’s independence’
The effect on individuals with parents who exerted greater psychological control during childhood was found to lower their mental wellbeing during adulthood significantly – particularly during the ages of 60-64. This effect was so pronounced that the authors of the study liken it to the recent death of a close friend or relative.

Dr. Mai Stafford, reader in social epidemiology in the MRC Unit for Lifelong Health & Ageing at UCL, explains: “We found that people whose parents showed warmth and responsiveness had higher life satisfaction and better mental wellbeing throughout early, middle and late adulthood.”

Examples of psychological control which can limit a child’s independence and leave them less able to regulate their behavior include not allowing them to make their own decisions, not letting them have their own way, invading their privacy and fostering dependence (rather than independence).

From other studies, the research team also know that that if a child shares a secure emotional attachment with their parents, they are better able to form secure attachments in adult life.

Dr. Stafford says:

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Dr. Stafford adds that “policies to reduce economic and other pressures on parents could help them to foster better relationships with their children. Promoting a healthy work-life balance is important as parents need time to nurture relationships with their children.”

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Earlier this year, Medical News Today reported on a new study that showed how important it is for parents to avoid ‘overvaluing’ your child to prevent narcissism and the value of parents showing warmth to develop high self-esteem.

Cuddling With Your Partner Does Something Very Surprising to Your Health

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If you can’t get close enough to your significant other (or non-significant other), scientific studies have your back, quite literally. As it turns out, cuddling might as well be a miracle drug.

Most of us already know that cuddling with someone, be it our pets, best friends, partners or kids, makes us feel cozy, safe and warm. It’s what we want to do when it’s drafty in our apartments, or when The Walking Dead is on and we can’t handle watching zombies take big sloppy bites out of humans alone, or when we’re just bummed out and need a soft surface to lay our heads.

But could snuggling be scientifically proven to be healthy? Thank goodness — the answer is yes. Here are five reasons why:

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1. Cuddling makes us happier.
When you’re physically close to someone, you tend to feel happier and healthier. According to Women’s Health Magazine, “touching someone releases [dopamine and serotonin], both of which can boost your mood and curb depression.”

Furthermore, when a person is physically close to someone, his or her body releases oxytocin, another “happy chemical” that contributes to us cultivating and maintaining intimate, healthy relationships. According to Paul Zak, an expert on the beloved hormone and self-proclaimed “Dr. Love,” oxytocin is the “moral molecule behind all human virtue, trust, affection and love, a ‘social glue’ that keeps society together.” A hand hold, a snuggle, a hug — all of these actions supposedly increase levels of oxytocin.

Oxytocin isn’t necessarily a miracle molecule, of course. Jennifer Bartz from the Mount Sinai School of Medicine, for example, discovered that the effects of oxytocin really depend on an individual’s personality and perspective, according to Slate. But several studies have pointed to the molecule’s ability to promote “feelings of devotion, trust and bonding” between people, giving oxytocin its title of “the bonding hormone.”

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2. Cuddling can strengthen our immune systems.
Intimacy is healthy. The human touch has been shown to drop a person’s levels of cortisol, the main biological culprit of stress. As Roberta Lee of Beth Israel Medical Center in New York explains, “Cortisol suppresses the immune response. Anything that increases the relaxation response triggers the restoration of your immune response.”

The result: Your body is more able to fight off viruses and inflammation, making you happier and healthier.

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3. Cuddling makes us less anxious.
Not only does close proximity to other humans make you feel happier, it can also decrease your worries and anxiety. When you touch someone, the skin-on-skin contact signals your adrenal glands to cease excessive amounts of cortisol production, the aforementioned stress hormone.

“Having this friendly touch, just somebody simply touching our arm and holding it, buffers the physiological consequences of this stressful response,” Matt Hertenstein of DePauw University told NPR.

James Coan, an assistant professor at the University of Virginia, conducted a study that illustrated the helpfulness of the human touch, specifically hand holding. While administering MRIs, he warned 16 married women that they might “experience shock.” Each woman’s state of anxiety was instantly illuminated in the MRI scans. But when these women held each other’s hands for comfort, their elevated stress response subsided. When their husbands held their hands, the ladies grew even more relaxed.

“There was a qualitative shift in the number of regions in the brain that just weren’t reacting anymore to the threat cue, Coan told CNN. As Coan and his colleagues noted in their paper on the study, marital hand-holding influenced the neural activation in the hypothalamus, which in turn influences the release of cortisol.

4. Cuddling could help us sleep better.
Oxytocin does more than help us bond and potentially increase happiness. Since increased levels of oxytocin help you relax and reduce high blood pressure, it could also be connected with better sleep alongside your partner, Rachel E. Salas of the Johns Hopkins Center for Sleep suggested.

Moreover, studies have found “suggestive evidence that couples’ emotional closeness and physical intimacy during the daytime and prior to bedtime may promote sleep,” which we’d presume makes each bed partner happier — read: less grumpy — the next day. So get your eight hours with your significant other or another warm body by your side.

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5. Cuddling goes hand-in-hand with closer relationships.
Studies have shown that couples that regularly cuddle and snuggle in bed are most likely in healthier relationships.

“One of the most important differences involved touching. Ninety-four percent of couples who spent the night in contact with one another were happy with their relationship, compared to just 68% of those that didn’t touch,” Richard Wiseman, a psychologist at the University of Hertfordshire in England told the Telegraph. While 68% isn’t the lowest number in the world, 94% would seem to reflect positively on the effectiveness of cuddling and touching at night.

Moreover, couples who used to be more physically affectionate but have since cut back on cuddling could potentially be in bad shape. According to Wiseman, “If you have a couple who used to sleep close together but are now drifting further apart in bed, then that could [be] symptomatic of them growing apart when they are awake.”

The bottom line? Cuddling is definitively excellent. So if you want to spend the evening cuddled up on the couch with the closest person you can find, you should. Because science says so, and you would be doing your body some good.

A Tribute to Mothers of Special Children

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It is very awkward to interview the feeling of a Mother with a special child.
This mother whom I approached is a strong believer of her Faith, and holds this verse;
“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future” (Jeremiah 29:11)
“God has a plan,” my friend told me. “God has a plan and I will trust Him.”

God has given me the privilege of being friends with special women who have faith and compassion like few others. They are mothers of special children — handicapped children.

  • One has an autistic child.
  • The second contracted measles when she was pregnant, and her daughter was born with cerebral palsy.
  • The third has a child who has been in a wheelchair most of her life.

These women will no doubt receive greater rewards in heaven because of the sacrifices they have made through the years. They have to be more patient and committed to deeper love and perseverance than many other moms (although being a mom is always a challenge and privilege).

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These moms have seen their children taunted and treated badly. They have also had to make difficult decisions about where their children will best be able to develop the resources they have been given and become as self-sufficient as possible. If they choose a group home, they must ask themselves, ”Will the caretakers be kind to the children or abuse them?

“God has a plan! I will trust Him,” my friend told me. She was so happy. God has a plan!

I encourage you to make an effort to give an encouragement card to the mom in your life who has been given a special child from God.

Happy Mother’s Day!!